Wednesday, May 28, 2014

Day -1: A Day of Rest

Ryan slept most of the day and didn’t eat or drink anything until about 9:00 PM when he decided he wanted microwave popcorn. Coincidentally, his Grandma had dropped off one bag of it to the hospital earlier in the day, so that is what he had and then he went back to sleep.

We received some good news late in the afternoon – Ryan’s virus panel and chest x-ray came back negative. However, he still has had a few coughs that sound like he has a bunch of junk in his throat. I think it may be the start of Mucositis, which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy. It affects almost all patients undergoing high-dose chemotherapy and bone marrow transplantation.

Between the nausea and potential pain of Mucositis, the team gave Ryan Zofran and Oxycodone earlier in the day. He really seemed to enjoy that combo and was acting really funny. He was talking really slow and slurring his words like a drunk person and made the following statement:
"I like this sleepy medicine because it makes me lazy, and I like to be lazy. Ahhh, feels so good - best day ever. On my muscle parts it feels like a clump of fluff and my bed feels wavy."

The low point of the day was when I showed Ryan a calendar I made to help us keep track of the days pre and post transplant. He started crying and said “I didn’t want you to put medical stuff on it!” Then he insisted I erase it and got furious with me when I told him I couldn’t (umm… it was written with a sharpie). I am not sure what that was all about, but I just put it away so he didn’t have to see it.

I have wondered how Ryan feels about the transplant and whether he has any concept of the fact that it is potentially saving his life. We have never said or implied to him that he might die or that the transplant is needed to save his life. We generally talk about how his bone marrow isn’t working right and that there is a man who is going to share some of his good bone marrow to help make Ryan better. Out of curiosity, I asked him, “If you could say something to the man that is giving you his bone marrow tomorrow, what would you want to say to him?” He looked me straight in the eye and wholeheartedly said two simple words: “Thank you.”

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